The author is the mother of two sons, the younger of whom has Downs syndrome.
The aim of her book is to get people ācoming alongside people touched by disabilityā.
Coming alongside people touched by disability, is also the subtitle of Stephanieās book. As she states in the introduction, the focus of her book is on a vision for the future, for a better understanding, the focus is definitely not on the pain of the past.
Stephanieās book is about aĀ vision on a better way, (1) a better way to understand disability biblically, (2) a better way to understand the challenges that face individuals and families touched by disability and thirdly, (3) a better way to understand the role of the church in the lives of people with differing abilities.
It is these three better ways that Stephanie talks about in her book. In part one ofĀ the book , āAbout The Foundationsā, she deals with a better way to understand disability biblically.
Part 1 of the book is divided in five chapters. These chapters are on truth, on identification, on respect, on relentlessness, and on restoration.
āOn Truth : The Four Missing Wordsā, is the title of chapter 1 of part 1 .
In this chapter Stephanie discusses three different views as to what is true about the nature of disability and about the nature of our world at large. The first view being discussed, which she calls the historical view, is the view in which disability is seen as an abnormal part of life in a normal world. This view considers disabilities as problems, defects and nuisances and may lead to neglect, abuse and even extermination of these so-called abnormal people.
The next view being discussed is called the postmodern view. In this view things are completely turned around andĀ people affected by a disability are seen as completely normal people living in a normal world. To illustrate the consequences of this view, Stephanie quotes from the writings of a nationally known speaker at a Down syndrome conference:
āHaving a disability is a difference like any other human characteristic .It isĀ not a deficiency. It is by no means a tragedy and does not deserve pity or benevolence or charity.Ā Now is the time to recognize and celebrate disability rather than ignore, devalue or use it as a justification for lower expectations.ā
ItĀ is over against these two different viewsĀ thatĀ Stephanie puts forward a third view from aĀ biblical perspective on the nature of disability and the nature of the world we live in. This biblical view asserts that disability is aĀ normalĀ part of life in anabnormalĀ world.
These four words, āin an abnormal worldā, make all the difference and are the crucial four missing words in the two other views. Due to manās fall into sin, our world became an abnormal world (Romans 8;20, āThe creation was subjected to frustration, not by his own choice.ā)Ā Brokenness and difficulty became an integral part of human life, affecting every aspect of human life, not only the spiritual but also the physical, the intellectual, the emotional, the psychological, the social, yes every aspect of human life.
And thus, disability is essentially a more noticeable form of the brokenness that isĀ commonĀ to the human experience ā a normal part of life in an abnormal world.
However, Stephanie also stressed the point that not everything in human experience is ruined by the fall but that everything in human experience is affected by the fall.
Over against the brokenness,Ā we may also experience Godās common grace, participating in the damaged but not obliterated blessings of being created in Godās image and being endowed with purpose.
Chapter 2 of part 1 :Ā āOn Identification: Same Lake, Different Boatā
In this chapter Stephanie deals withĀ Comfort and Identification, Biblical Identification and Biblical Application.
Most people are not immediately at ease with those who have disabilities.
At times, we are confronted with the honest truth that we wrongly look at disability as an abnormal part of life in a normal world. In other instances, the discomfort comes from the vulnerable realization that disability is a condition that any of us can (and many of us will) personally encounter at some point in our lifetime.
Stephanie refers to the common expression that āweāre all in the same boatā.
She states that a more accurate statement would be: ā same lake, different boatā.
Due to the current societal emphasis, instead of seeing ourselves in the same lake, but in different boats, we tend to see ourselves in different lakes entirely. The result is that we end up feeling justified in simply seeking our own level of personal comfort in life ā unaffected by the needs or desires of those around us.
UnderĀ Biblical IdentificationĀ andĀ Biblical Application, Stephanie points to the identification and association of God with us. If God in all His splendour and transcendence chooses to be immanent to us, that is to live in us, shouldnāt we strive for a close association with our fellow human beings?
We must recognise that we all have needs āthat is a normal part of life in an abnormal world. Our brokenness and neediness as humans is universal; how it manifests itself is variable. It is same lake, different boat.
Chapter 3 of part 1 :Ā āOn Respect: Common Grace, Special Needsā
What is the basis of true respect?Ā Ā Do we recognize it when we see it?
Do we know how to practice it?
These are the questions Stephanie sets out to answer in this chapter. Her answer to the first question is :Ā The Scriptures show us that there are two āpillars of respectāĀ that undergird our relationships. Those pillars are āthe image of Godā and āGraceā.
About the image of God Stephanie quotes a scholar at Covenant TheologicalĀ Seminary.
āScripture calls us to recognize that everyone weāre ever going to meet is made in the image of GodĀ – and that means theyāre gloriousā¦. Thatās to be our first response: to see the glory of a personā¦to first see their glory and their dignity as a person made in the image of God and to treasure all the things that are good and admirable and beautiful about the person as a person made in the image of God.āĀ Ā End of quote.
Furthermore, Stephanie states that it takes a conscious effort for us to concentrate on the most fundamental blessing of creation ā that we are all created in the image of God.
The image of God within each individual can be likened to a mirror that reflects Godās glory. In a world now impacted by the fall, each personās mirror is cracked, yet all the pieces still remain. However, we find it so much easier to identify the cracks in the mirror, and so we miss the image entirely.
Under āThe Second Pillar: Graceā, Stephanie reminds her readers that respectful relationships have to deal with both realities of life ā the blessedness of creation and the brokenness of the fall.
We must acknowledge that the brokenness of the fall comes to bear heavily in our relationships, too.
Referring to Luke 4:18-19, Stephanie points out that we are the poor, the prisoners and the blind, that we are the ones with desperate needs and that God who is rich in grace, has met us in our need.
And therefore, if we relate to those with significant needs, we are patient with them, because we realize that we also have great needs of our own, albeit different ones.
Chapter 4 of part 1, āOn Relentlessness: Danteās Circles of Disabilityā
In this chapter, Stephanie addresses the issue of the ārelentlessnessā of life.
She states, āThe reality of experiencing disability as a normal part of life in an abnormal world is that disability brings difficulty. And one of the most challenging aspects of disability is the relentlessness of it. It just doesnāt quit. You donāt beat it. One cannot escape it.ā
Stephanie identifies three responses to the relentlessness of life.
The first one is to develop a victim mentality : In their minds the world owes them, you owe them, and God owes them.
The second response is to attack with an attitude of āI will beat thisā.
The third one is to engage reality with a perspective that is honest and God-reliant.
In clarification of this response, Stephanie, referring to Josephs example (see Gen. 45:5-8)
states :Ā āWhether you are coming alongside of a family affected by disability or you are facing the mundane, repetitive , or relentless aspects of your own life, the solution is the same. We each need to ask God to help us evaluate our hearts and to provide perspective through a God-focused life ā fixing our eyes on Jesus, the author and perfecter of our faith ā that we may run with perseverance the race marked out for us.ā
Chapter 5 of part 1 :Ā āOn Restoration: Thy Kingdom Comeā
Stephanie explains in this chapter that there is āa kingdom to be experienced whose substance is not āmagicalā or ācome and gone.ā Nor is it tied to the ācompensation of all things.āĀ ā
In respect to theĀ ācompensation of all thingsā, StephanieĀ states: ā Our court system has become overburdened with lawsuits by those seeking compensation for undesirable events in their lives, even if malice or neglect were not contributing factors.
Someone has to pay.ā
The kingdom of God, however,Ā is not characterised byĀ compensationĀ but byĀ restoration.
Another feature of the kingdom of God is that it isĀ alreadyĀ here and also that it isĀ not yet.
The kingdom is here in part ā right now. And the kingdom is coming in complete fullnessĀ Ā ā in the future.
As Christians we have the privilege and responsibility of being instruments of the kingdom of God. Godās love displays its power of restoration in and through the powerful, active presence of the Holy Spirit in our lives. Stephanie asks herself the question what this means in practical terms. Her answer: One way of looking at how God delivers his restorative power is through healing, help and hope.
And then Stephanie discusses restoration under the subheadings of ārestoration through healingā, ārestoration through helpāĀ and ārestoration through hopeā.
Under ārestoration through hopeāĀ Stephanie states : If healing is the closest form of theĀ already-nessĀ of the coming of the kingdom of God, and if help moves farther down the spectrum toward theĀ not-yet-nessĀ of the kingdom of God ,then hope points us most clearly to the ultimate consummation of the kingdom of God in the futureā¦
When healing is not in the will of Godās providence, and help is not enough – and it never will be in this lifetime – then hope is always a present reality.
āHe who was seated on the throne said, āI am making everything new!ā Then He said,
āWrite this down, for these words are trustworthy and true.ā .ā (Rev. 21:5)
Now we come to part 2 of Stephanieās book, entitledĀ āAbout the Familiesā.
As mentioned in the brief introduction, this part is about a better way to understand the challenges that face individuals and families touched by disability.
This part 2 is divided in four chapters, the chapters 6 to 9.
Chapter 6 is called āOn Coming to Terms with a New Realityā.
When disability strikes a family, it is akin to a September 11 experience. It is shocking.
Nothing is ever the same again. How the family sees the world, how they live, and how they perceive their future are forever altered. Disability doesnāt just happen to an individual ; it affects the entire extended family. The life of a family is often turned upside down by the onslaught of a series of immediate medical and therapeutic interventions.
How can the church develop a compassionate response to the family that is coming to terms with the new reality of disability in its life?
The community of believers needs to understand what the family is experiencing and learn to identify what the family needs.
Stephanie asserts that the first and most intense experience of the family is one of grief.
Disability can represent many types of loss. For someone who has become disabled later in life or who encounters a degenerative disability, it can represent the loss of capacity and all the accompanying frustrations.
In addition to the experience of grief the family will experience the need for making adjustments in many areas. There are medical and financial issues as well as legal and social issues to be dealt with. There are concerns for the future.
Under the subheading āIdentifying and Responding to What a Family Needsā,
Stephanie states that ā Extending mercy is impossibleĀ if we donāt comprehend the nature of anotherās struggle. At the same time, identifying what the family needs and responding to those needs are the steps that will make mercy a reality.
Stephanie discusses the following steps:Ā Ā Privacy to Process, Presence and Normalcy.
Give the family (or individual) permission to take the time they need to mourn and come to a sense of resolution, instead of rushing them through bereavement. Give themĀ privacyĀ to process. However, the right to privacy is not a call for abandonment!
The family (individual) needs to know the loving and supportiveĀ presenceĀ of others now more than ever.Ā In chapter 8 Stephanie elaborates onĀ normalcy, establishing a ānew equilibriumā or ānew normal lifeā.
Chapter 7,Ā āOn Negotiating a Path to Acceptanceā.
The familyās concept of acceptance is crucial. Accepting disability in its midst is critical to the spiritual, emotional, and relational health of each family member.
Acceptance, in this context, could be defined as: developing peace about the presence of disability in the life of a family.
To find and walk that path to acceptance, the family has toĀ releaseĀ earlier expectationsĀ and to develop a plan toĀ redirectĀ their lives, both as part ofĀ embracing reality through conflict.Ā As a third aspect of embracing reality through conflict, Stephanie mentions āincorporating new responsibilitiesā. A fourth aspect is āĀ relinquishing controlā.
Going back to the above definition of acceptance : a developing peace finds its deepest roots in relinquishing control and abandoning ourselves to genuine faith in our heavenly Father, who is worthy of our trust and respect.
The beauty of embracing reality is that, even though life is difficult, reality is not all negative. True, it requires releasing our expectations, redirecting our lives, exercising new responsibilities, and relinquishing control. The pathway to acceptance, however, also involves realizing the benefits of the place where God has taken us. Making our peace with difficulty frees us to find the beauty in the ashes too.
Chapter 8,Ā āOn Living a New Normal Lifeā.
In the summary of this chapter Stephanie reminds her readers that, āfamilies with a disabled family member face the same types of struggles as other families, but to a greater degreeā.Ā Every family faces significant challenges in living and in raising children. But there are considerable differences of degree in many areas for families with disabled family members. She discusses the differences for the areas of personal care, education, behaviour, social life, and family relationships. These differences have predictable results in the form of stress and exhaustion for the families concerned.
How can the church appropriately come alongside in a way that honours God, strengthens the family unit, and enriches the body of Christ. That is one of the questions Stephanie puts to her readers.
Chapter 9,Ā āOn Grappling with the Great Opportunityā.
Referring to the Sermon on the Mount where Jesus said: āEnter through the narrow gate.
For wide is the gate and broad is the road that leads to destruction, and many enter through it. But small is the gate and narrow the road that leads to life, and only a few find itā, Stephanie points out that living with long-term disability can provide a Great Opportunity to illuminate the entrance to the narrow gate. It affords the opportunity to embrace the pathway of discipleship over the pathway of our own agendas, the opportunity to identify with the Man of Sorrows, and the opportunity to call others to this counter-cultural journey of faith. (page 146)
Part 3 of the book is āAbout Facilitation in the Churchā .
This part consists of the following four chapters, On Hospitality, On Belonging, On Wisdom, and On Change.
I will conclude this excerpt by paying some attention to the first two chapters.
Chapter 10, āOn Hospitality: No Room at the Innā .
The essential characteristics of what the church is called to be ā a hospital for sinners, as opposed to a country club for members only ā can be found in the passage of Matt. 23:23-24, where Jesus addresses the Pharisees and tells them to practice the law by administering justice and showing mercy and faithfulness.
This forms the theme of this particular chapter.
Stephanie compares the church, a hospital for sinners, with a braided cord, stating that the church could be characterised as a place where the love of a stranger is uniquely expressed through these intertwined ways : the strand of justice, the strand of mercy, and the strand of faithfulness.
When discussing the strand of justice, Stephanie asserts that the church has to bring the true gospel in doctrine as well as in deed, for the true gospel in word and deed is one integrated gospel. In administering justice, the goal is not to show partiality to anyone, but fairness to all. This is a crucial concept to understand in ministries of justice for those touched by disability. When addressing disability in the church, the goal is not to convey that people with special needs are somehow Godās special people ā those who are due extraordinary rights and privileges. It is to restore a fair and respectful treatment of every person as a unique individual created in the image of God, including people with disabilities. (page 155)
Chapter 11, āOn Belonging: Same Body, Different Partsā .
In this chapter, Stephanie elaborates on the Biblical concept of belonging: unity in diversity. Equal concern is to be expressed for all the unique parts of the body of Christ.
In regards to practical manifestations of belonging, Stephanie remarks that when a church body is expressing a healthy sense of belonging, the individuals in that body will experience the gospel as a community through the following five ways: Christian education, community life, corporate worship, caring, and contribution.
And then she takes the reader through these five ways. In conclusion, I would like to pass on a remark she makes, while discussing ācontributionā.
āAll too often, when we focus on people with special needs, we emphasize their specific disability and fail to see their abilities.ā (page 182)
Stephanie concludes her book with a chapter āOn Wisdomā and a chapter āOn Changeā.
In the chapter āOn Wisdomā, she addresses questions such as , āWhom do we help?ā ,
āHow much do we help?ā , āWhen do we help?ā, āFrom where do we help?ā, and
āWith what attitude do we help?ā .
In the final chapter, āOn Changeā, she addresses the questions āDo you want to change your church?ā and āRevolution or Reformation?ā.
At the end of each chapter, you find personal application questions.